Study: HIV-positive people would rather die earlier than suffer lipodystrophy

BY Advocate.com Editors

September 26 2002 12:00 AM ET

A study in the American Journal of Medicine underscores the impact that the disfiguring fat-redistribution condition of lipodystrophy can have on some HIV-positive people. A majority of the 75 HIV-positive Californians surveyed for the study said they would give up an additional year of life if it meant avoiding lipodystrophy. The condition is marked by visible buildups of fatty deposits in the stomach area and the neck, back, and shoulders as well as fat loss from the arms, legs, and, particularly, the face, often resulting in severely sunken cheeks.

The survey included questions based on descriptions of two hypothetical HIV-positive patients--both doing well on antiretroviral therapy, but one suffering from body shape changes associated with lipodystrophy. Photographs of a patient suffering from lipodystrophy also were included for the survey respondents to see. Two thirds of the survey respondents said they would be prepared to start drug therapy later and give up an extra year of life to avoid the condition as depicted in the survey. On average, the survey respondents were willing to give up a mean 2.1 years of extended life to avoid developing lipodystrophy.

The study authors conclude that many HIV patients are willing to take treatment risks to balance HIV suppression with quality of life issues and that doctors should discuss the side effects of therapy with their patients and respect any patient decision regarding quality of life concerns.